Ned was born at 28 weeks weighing just 1.2kilos

He had a life-threatening grade four bleed on the brain, sepsis and needed resuscitating and ventilating.

The gift of lifeL The remarkable story of Ned Higham, now one; here with his mum Kerry

Mum, Kerry, of West Walton, was told that the odds were very much against him and it was unlikely he would survive. By this point she hadn’t even met her son.

Kerry was asked if she wanted to withdraw treatment and baptise Ned, but she refused to say goodbye

As the days passed Ned became sicker and by the time he was five days old, the team at Peterborough Hospital said there was nothing more they could do and his only chance of survival was to go to Addenbrooke’s hospital. But it was unlikely he’d survive the journey

He survived the journey but once again Kerry was being told the chances of taking Ned home were slim to none

The gift of lifeL The remarkable story of Ned Higham, now one;

However, somehow Ned found his fight and began turning corners despite having so many serious issues

And all though since being discharged from Addenbrooke’s he’s been admitted back to hospital, tomorrow he celebrates his first birthday - something that no doctor predicted would happen.

HERE IS HER REMARKABLE STORY TOLD IN HER OWN WORDS

The gift of lifeL The remarkable story of Ned Higham, now one but pictured here after his birth at Addenbrooke's

At the time when I desperately needed to be with my son, The Sick Children’s Trust made that possible.

When I was nearly 27 weeks pregnant my waters broke. Fortunately I was given steroid injections to keep my baby, Ned, in for a little bit longer to allow his lungs to develop as much as possible.

I was at Peterborough City Hospital for over a week before I was allowed to go home. Two days later I was back in hospital giving birth prematurely to my son.

It’s all still a blur, happening in the space of just three hours. I was experiencing back pains which were actually contractions and despite all of the signs and symptoms I was initially told that I wasn’t in labour.

Forty minutes later I was told that I was fully dilated and needed to get Ned out. They told me to push. I had no idea how to push. Ned is my first baby and I was only 28 weeks pregnant so hadn’t even been to any antenatal classes. But as I began to push, Ned’s heart rate dropped rapidly so I had to have an emergency caesarean.

Ned arrived into the world at 8:57am on January 19 weighing just 1.2 kilos. And he was extremely poorly.

By 2pm he had been resuscitated and ventilated. I was visited by two consultants who told me what he’d been through and that he had a grade four bleed on the brain and suspected sepsis amongst many other things. It was highly unlikely he’d survive. The odds were very much against him.

My heart shattered into a thousand pieces. I hadn’t even been able to hold my baby or cast my eyes on him and already that precious first hold and sight was being taken away from me.

The team asked me if I wanted Ned baptised and whether I wanted to withdraw treatment. I said no. If I did that, I was saying goodbye to my son. And there was no way I was letting him go. The only person who was going to make the decision for Ned to leave this world was him. No one else was giving up on my son. It was his decision.

I begged them to let me see Ned and when they finally wheeled me to the neonatal intensive care unit (NICU) it was a huge shock. He was so tiny and ill. My poor little Ned was fighting so hard. And all I wanted to do was scoop him up, cuddle him and tell him that he would be fine. Everything would be just fine.

As the days passed, Ned became sicker and sicker. His blood pressure dropped through the floor and he wasn’t showing any signs of improvement.

By the time he was five days old, the team said there was nothing more they could do. His only chance of survival was to be transferred to Addenbrooke’s Hospital in Cambridge – an hour and 40 minutes away from home.

Ned was predicted to not even survive the journey. And as we left Peterborough City Hospital I remember saying goodbye to the nurses and that we’d see them soon. And the hopelessness that cast a shadow on their faces said a thousand words. They truly thought they would never see us again.

As we arrived at Addenbrooke’s Hospital at just after 5am, I had no idea what was going to happen. I didn’t know how long Ned would be in NICU. Given that his prognosis was so grim, I didn’t want to miss a second with my baby. But my options were limited. I didn’t know how I could be there for him every second of every day.

I didn’t think it would be possible for so many reasons.

Because of my emergency caesarean, I couldn’t drive from my home in Wisbech to Cambridge every day as I physically wasn’t allowed to. I wasn’t allowed to sleep by Ned’s cot on NICU because of how unwell he was. So it looked like my only realistic option was staying at home, waiting by the phone for news on whether my son was still alive.

I don’t know if I could’ve coped with that, mentally I think it would have really done a lot of damage.

Fortunately, The Sick Children’s Trust came to my rescue. I was given a set of keys to Chestnut House, which is one of ten ‘Homes from Home’ run by the charity to keep families close to their seriously ill children.

Chestnut House is just the floor below NICU where Ned was – so I felt comfortable that I wasn’t far away from him at all. I let myself in, walked around – and it was fantastic.

There was a kitchen and a peaceful living room. I also realised that I had my own private room with an en-suite bathroom. I feel really emotionally when I look back on that day, a time when I desperately needed to be with my son. And The Sick Children’s Trust is the charity that made that possible.

Back at Ned’s bedside, I was still being told that the chances of taking my son home were slim to none. To be told time and time again that my baby may only have hours to live was horrible. But I was determined that no one would give up on him.

Having a premature baby is so daunting. Prematurity is a whole new world. There’s so much to learn and understand. What I found helped was that by being in Chestnut House, I could speak to people in similar situations to me which really helped, or read the stories of babies like Ned who had survived. It gave me hope.

Despite all the odds set against him and the doctors’ predictions, day by day Ned continued to prove everyone wrong. Ned had a collapsed lung, hole in the heart and conjugated jaundice. But he was continuing to turn corners. He was fighting a big battle, but every morning I woke up he was still here with me.

The Cambridge team managed to stabilise him within four weeks and build up his strength. During these weeks, because of Chestnut House I could be with Ned all day, talking to him, reading to him and simply being there for him. But I could also make sure I had lunch and dinner and rest myself, which is extremely important in order to stay strong mentally and physically when any day you could lose your baby.

I was on my own at Addenbrooke’s Hospital for most of Ned’s treatment; his dad would come up a couple of times but had to be at home for the rest of his children. So for me, Chestnut House wasn’t just a practical support – it helped me so much emotionally too.

Abi and Suneela who work at Chestnut House are so kind and caring – their words and actions mean so much in such an overwhelming situation. Alongside Abi and Suneela, I also talked to other parents when I was making and eating my dinner. It was comforting.

Those people and their babies will always have a special place in my heart as they supported me during a time when no one else could’ve understood what I was going through. Unless you’ve been in that situation, you can’t understand it. There’s a bond I made with those families.

Sadly, a week after we left Cambridge we were back. We had been transferred to our local hospital but I noticed that Ned seemed to be deteriorating again. I brought my concerns to the doctors’ attention and they believed that Ned had a strangulated hernia.

They called Addenbrooke’s Hospital which confirmed that he needed to be transferred back.

The doctors discovered that Ned had an infected hydrocele and needed surgery. While he went into theatre, Chestnut House came to my rescue again. I waited for the phone call in my private room at Chestnut House. When that call came, I was back straight at his cot side.

To say that they predicted Ned wouldn’t survive and that he’s here now shows what miracle he is. He is doing really well, moving about and enjoying life. He’s my little superhero.

He’s had five surgeries since being born and is under the care of Addenbrooke’s Hospital and will be for the foreseeable future, but to see him come this far is incredible and I’m so proud of him.

During his hospital treatment, I really, really, don’t know what I would’ve done without Chestnut House and The Sick Children’s Trust. Because of this charity I was able to be by my poorly baby in what doctors said would be his only days.

I had never heard of The Sick Children’s Trust until I needed the charity’s help. I want to share Ned’s story so that other people know that help is out there.

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